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JenHa55
09-15-2006, 06:07 PM
I was recently reading an article from a very reputable Lupus newsletter that shows new research saying that Lupus never goes into "remission" and that remission means dormant and that although Lupus has periods of time where it is "quieter", it is not actually a remission like with MS or Cancer where the disease is virtually nonexistant at times.

Has anyone else read a similar article. That might answer a personal question I have had for 11 years - what is wrong with me - why can't I get into a remission, I'm doing everything right. Apparenlty I am, it's the Lupus, it doesn't go into remission as I was originally lead to believe.

SoleSinger
09-15-2006, 07:40 PM
I haven't heard that, but I have heard that very few people go into a real remission...

sara
09-15-2006, 11:24 PM
i believe had a total remission for a 4 mnth period when i was completely free of any lupus symptom. I must also add that this was also one of the most carefree periods i had in a long time when i was at my parents place and felt truely relaxed.Infact, i once told my mom that i shd get tested myself for lupus again , maybe i never had it in the first place and it was all a case of misdiagnosis. But once i returned to my place and resumed the old routine, slowly the symptoms came back and i had to start medication again.

Saysusie
09-16-2006, 04:23 AM
Hi JenHa55:

I have been in what they call "remission" for several years now. My doctors told me that Lupus remission merely means that my symptoms can be controlled with very few medications! Meaning, the disease is still there, I still get symptoms, suffer flares, etc. But I am taking little to no medications specifically for Lupus. I am controlling my disease with lifestyle changes, precautions, good diet, exercise, etc.
My new rheumatologist told me that my "remission" is actually what he calls "Mild Lupus".
So, I guess that the article you read is pretty much the truth. Lupus is a chronic and lifelong disease that gets better and gets worse and, as you have found, the roller-coaster depends upon a great many variables and is different for each of us!!
I do, however, take medications for my Fibromyalgia and my other illnesses that accompany Lupus!! So, who knows?

Peace and Blessings
Saysusie

stardust
09-16-2006, 04:26 AM
I had asked my Dr. that also in the beginning of this, he said "there is no remission, because that implies you are FREE of the disease, he said there are periods when lupus is not AS active, but NEVER gone."

JenHa55
09-16-2006, 09:06 AM
Hi there, yes it sounds by the description of others that it is not indeed a true remission and that Stardust's doctor has agreed with this as has mine - in that the disease can go "quiet" but never in "remission" as remission would mean you are disease-free.

10 years ago doctors would originally say to you that you could go into "remission" but now they tell you that your disease could hopefully go "quiet" but that it is not that difficult to "trigger" it back up again.

Unfortunately, my disease has never really gone quiet. There are good periods of time for me and bad periods of time for me but never quiet. So, for me - I love those good periods of time.

vernb2
09-16-2006, 10:51 AM
I found this topic very helpful. I am newly diaganosed (though I have been ill for a long time) I have been on meds for two months and was getting frustrated that my lupus is not "under control" I cant get a good week symptom free. I havent a clue if the is "Normal" I find this site very infomative.

psalm 56 3
09-16-2006, 11:02 AM
This is a very good topic. I have had my Lupus disappear for years at a time. I have even had the doctors tell me that I do not have Lupus. So in my mind, given I had no real symptoms for some time, I assumed I was falsely diagnosed. Therefore, I went better than 4-5 years without medical attention. Every now and then I would feel like I had the flu and thought maybe I am just being lazy. It wasn't until they found fluid around my heart that I now believe I was diagnosed properly. I will from this point on seek medical care and do as I am told. What I have learned from all of this is NOT to dismiss what your body is telling you.

SoleSinger
09-16-2006, 11:14 AM
Hi there, yes it sounds by the description of others that it is not indeed a true remission and that Stardust's doctor has agreed with this as has mine - in that the disease can go "quiet" but never in "remission" as remission would mean you are disease-free.

10 years ago doctors would originally say to you that you could go into "remission" but now they tell you that your disease could hopefully go "quiet" but that it is not that difficult to "trigger" it back up again.

Unfortunately, my disease has never really gone quiet. There are good periods of time for me and bad periods of time for me but never quiet. So, for me - I love those good periods of time.


I'm not sure I agree with that... I don't think that remission= cure. From what I have heard a REAL remission is when you have no symptoms and are on minimal if any drugs. But, it doesn't mean that it can't come back!

Like, there is no cure for cancer, but it does go into remission. And sometimes stays there, and sometimes doesn't... I think there is a difference...

stardust
09-16-2006, 11:22 AM
I know there are times my ana has been negative as well as other times very high.
Again, the explanation from my Dr. was that certain meds (especially prednizone) which we all periodically have to take alters the blood work.

My first Dr. I saw was together enough to know this and even tho I showed negative, he continued to look at ALL options and did more tests rather than excuse me as some depressed, over stressed, paronoid, menopausal woman, which so many Dr. do!!!!!!!

I sooooooooo agree in US knowing better than anyone how we feel and keep searching for a Dr.. that will be as determined as we are to find answers and BELIEVE us when we know something is not right.

psalm 56 3
09-16-2006, 11:23 AM
I guess I should have been more specific. I have been symptom free for several years at a time, and during this time frame I have not been on any medication for Lupus. I have taken Lupus medication once in 1999. The side effects of the medication were worse than the actual disease at the time so my doctor took me off of them. I have not been seen for the Lupus since that time.

psalm 56 3
09-16-2006, 11:27 AM
I am very curious about the ANA. I was told by my doctor that the normal ANA level should be 40. Mine was 1340. Does anyone know what the average ANA for Lupus paitents is?

stardust
09-16-2006, 11:34 AM
here is a FABULOUS web-site explaining all blood tests specifically for lupus.

www.geocities.com

it may help ,also you could google for Lupus Blood tests

stardust
09-16-2006, 11:36 AM
I guess you have to do

www.geocities.com/heartland/acres/7228/tests.html

psalm 56 3
09-16-2006, 11:41 AM
That was a lot of helpful information. Thank you

SoleSinger
09-16-2006, 12:05 PM
I don't think there is a "normal" anything for Lupus patients... LOL Since everyone is so different when it comes to their Lupus...

stardust
09-16-2006, 12:29 PM
THAT IS SOOOOOOOOOOO the truth,
I don't even know what NORMAL is anymore :lol: :lol: :lol: :lol:

ButterflyRN
09-18-2006, 06:26 AM
I was in remission for 9 years before I flared again last summer. So I do belive you can go into remission. And I have to say remission does not mean cure. Remission just means you have no active symptoms and the disease is quiet. Cure means Cure.